Wednesday, 1 May 2013

BADD2013: Demi-Wife (3/3)

All the time that I've spent thinking about writing this blog post, I have had The Decemberists 'Crane Wife' in my head. As such, I suggest you give it a listen as you read (or see the lyrics here and here).

As much as the tech I've written about makes me a very lucky chap indeed, there's something that makes me even luckier. It makes a lottery win look mundane.
A narrow escape from a sticky end seem every day. A large portion of chips when you only ordered a regular...well...perhaps it's on a par with that.

What am I talking about? Well, I am now (sort of) Mr Goldfish. Deborah and I recently went to Weybridge registry office in the middle of an unseasonable
blizzard (which I choose not to take as some kind of supernatural sign) and got legally hitched. Not that things are ever that straight forward for us. And
the funny thing is, that's not actually a bad thing at all.

You see, with our health, Deb and I are both used to the concept of pacing. We have to take weeks to accomplish something someone might do in an afternoon.
We break up the task with rests, sometimes having to change to a different task if, for example, it is something which, done too often, leads to a dramatic
increase in pain. Pacing. It's one of the greatest leasons a chronically poorly person can learn. Because without it, it's all too easy to become
frustrated.

I have noticed, however, that when applied to something like a wedding, which is a very public event and one which involves other people directly, if they
don't get the concept of pacing, they can misread the event entirely.

Our registry office do became significantly larger than we'd anticipated. Honestly I think we'd both felt that we might have two parents there, mainly as
wheelchair pushers. Four parents max (which is lucky as we only have the four). This number tripled. Not that that's a bad thing - it was very nice
having everyone there. But an event which we thought of as just a legal doodah suddenly became quite a bit more daunting.

Deborah, Stephen, Granny, Alex and Sophie.
Sophie might have been a bit happy, but it's so hard to tell with her.

This does serve as a prime example of why pacing is so important - it took us quite a while to recover from such a big event. If we'd tried to do things
traditionally, we'd not have made it through the day.

So come late July, we'll be finishing the job we started with our own, specially planned day with the absolute minimum of stress and with everything
carefully planned. And of course, those plans will never go absolutely smoothly, but because of the way we're doing things, if there is a hickup, we will be
able to raise our voices, shout 'All right you horrible lot, we're starting that bit over and stop your complaining' and everything will be fine. Having
such a period of time in between means that we have been able to spend time organising one section without worrying too much about the next. And we should,
barring Deb's toe trying to fall off, be as healthy as possible come the day.

My parents get this - my mother's chronically ill and my father has worked in special schools most of his life. Deb's parents find it a bit more difficult
to fathom, but are doing surprisingly well. I think that they saw that the registry office do really wasn't that meaningful and I think, as time moves on
and the concept of a fish and chip wedding lunch becomes a bit less alien, they can see why this means so much to us. It's also, I hope, clear to see that
we're both truly excited about July.

But I am aware that, because our marriage will not be conventional (which, as much as I could try to blame it on disability, is perhaps equally to do with
the kind of people we both are), there are people who might not quite get it. In the same way that same-sex marriage, or inter-faith marriage, or, heaven
help us, marriage between people who feel differently about chorizzo sausage, might be considered not quite official and meaningful. Not quite real.

But what do they matter?

In other posts I've spoken about tech, both special and widely adopted, and how important it is to me. So I wanted to tie them together with the wedding.

Firstly, walking sticks.

You know that a walking stick is an intrinsic part of your sense of self when you're watching a good film, have sunk so deeply into it that you have become
the hero, and, watching them wander out of their front door, think to yourself, "Idiot, you've forgotten your walking stick!"

My walking stick is a part of me. And so, I have to have the right one for the wedding. Yep, I have several! And as I try to create the perfect ensemble
(more on which later), so I have to choose the perfect stick. Should I choose the eagle-headed stick? The dragon from Cyprus my father picked up for me?
Or should I go with the knobkerrie my sister bought me when she went up Kilimanjaro? I'm still not 100% certain, but I think I am favouring the dragon.

I hope that being able to consider my stick as an intrinsic part of the outfit means that I am fully accepting of it as a part of who I am without that
having any negative connotations. In the same way as I am accepting of my glasses.

Cassie inspected my partly-made shoes from
Green Shoes, and decided that they really should
have been black...

Then there is all the help we've had from conventional tech. We booked the registry office on the strength of its website combined with the help of google maps and streetview. EBay has been our constant companion and, as Deb is making her own dress with a rather unusual fabric, we'd not have been able to source it easily any other way (although we did have some help from friends who could access charity shops...). I have always wanted a made-to-measure suit, and indeed I have one ordered. No visiting a tailor - Deb measured me up and everything has been ordered online from Suitopia. In a display of blatant
greed, I have also ordered made-to-measure boots from Green Shoes to match. I will write more about both of these on another day - but as a disabled man who
would have a slightly hellish time clothes shopping otherwise, these internet-accessable busineses have been a real blessing.

On the day, we want a small do. We'd not cope with having all of our friends there, and indeed, many of our friends would simply not be able to travel and
cope with the ceremony. So we will hopefully be setting up a live video stream for all those people who can't manage it. This is, I think, one of my
favourite bits of our system. It, along with several other ways of doing things, has made a day that will be inclusive. It will allow everyone to be
involved in the ways they can be. And that is, at the heart of all things, the essence of love. Love is inclusion. An understanding and acceptance of
people and things as they are. Love does not seek to change.

Which reminds me of this - perhaps one of my favourite bible verses;

Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it
does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. Love never
ends.(1 Corinthians 13:4–8a)

So, in my mind, disability has helped to teach me all these things. I have become less rigid, more yielding, and yet I also have the strength to endure for
the things I believe in. I have a confidence which does not stem from showing off. I do not look at the ways of others and feel envy, because I am certain
of and happy with myself (whilst, I hope, being entirely accepting of other people's beliefs). And I know that, although disability can make me feel
physically fragile, I can see my soul underneath and know its nature. And that it is eternal.

All that because I'm poorly. And because I met the right poorly girl to share a world with. A world which you're all a part of.